Taryn’s Story

Site created on December 21, 2018

On Friday, December 14th, our 2-year-old daughter Taryn was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare, aggressive, inoperable tumor in her brainstem.

In September, she participated in a sleep study, which revealed she had severe sleep apnea. The doctors resolved that it was due to enlarged adenoids, and she had them surgically removed in mid-October. After her surgery, we noticed we couldn't understand her as clearly as before when she spoke, but thought it could possibly be part of the recovery process. Throughout the following month, her speech didn't improve and the left side of her face started to look swollen/droopy. We took her to the doctor before our annual Christmas trip to Colorado, and the doctor insisted we postpone the trip so Taryn could have an MRI.

Taryn had the MRI last Friday (December 14th) and doctors identified the symptoms were being brought on by a tumor on her brainstem and diagnosed her with DIPG.

She went into surgery that afternoon to have a VP shunt put in her brain to address the hydrocephalus (accumulation of cerebrospinal fluid within the brain) caused by the location of the tumor.

After her surgery, we researched options, made some calls, and as a result of lots of prayers, last Wednesday Taryn was accepted into St. Jude Children's Hospital's blood-brain barrier clinical trial. They needed us in TN immediately so we packed up the car and made the 12 hour drive.

As soon as we got to St Jude’s, Taryn’s team of physicians got to work quickly. Since the tumor in Taryn’s brain is quite large and aggressive they quickly performed a decompression surgery to give her space for her brain to swell during radiation. During that surgery, they also took a biopsy of the tumor and placed a port in her chest so she can begin radiation treatment as soon as possible.

On December 29, a Saturday, we got a call from Taryn’s oncologist who told us to sit down for the news. The biopsy results showed the tumor is not DIPG (Praise God), but is angiocentric glioma. Still a very rare, cancerous tumor, but it comes with a MUCH better prognosis.

Everyone at St Jude’s is compassionate, competent and truly cares about CURING our baby girl and we feel so blessed Taryn is being treated here.

God has already declared victory over the DIPG in Taryn, and we are standing firm on that promise of complete healing. We welcome prayers/positive thoughts/mantras/whatever it is you practice/believe in for our sweet, smart, sassy and strong little girl, Taryn.

Thank you!

Newest Update

MRI Results

Journal entry by Taryn Peterson —

Just wanted to update everyone on the MRI Taryn had today at Children’s Hospital. 

First of all, she did great! She handled the whole process better than she ever has! There were hardly any tears, she was cooperative with the nurses, utilized the deep breathing we’ve been practicing and didn’t even try to pull off the mask that she had to wear a lot longer than she’s used to. Our brave girl! 

Children’s Hospital was amazing too. While we weren’t thrilled to have to go to the hospital during the COVID-19 pandemic, the precautions they took made it feel as safe as it could be right now. 

Ultimately, we received fantastic news! News we’ve been praying for. Her tumor is officially being classified as “stable”, BUT the oncologist told us he thinks it looks even slightly improved from her February scans. This means that Taryn can now move to having MRIs every 6 months instead of every 3 months. We are so thankful, grateful and have spent the day relaxing and celebrating as a family. Thank you for coming alongside us in prayer for Taryn today and always. 

“Be joyful in hope, patient in affliction, faithful in prayer.”
‭‭Romans‬ ‭12:12‬ ‭
Read More of the journal titled "MRI Results"
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